Social work and end-of-life care

Social work is important in end-of-life care

Archive for March 2014

Deprivation of Liberty Safeguards: review the constraints and get external reviews

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More on the recent Supreme Court decisions on Deprivation of Liberties Safeguards; this legal commentary provides helpful guidance to local authorities, care home providers, hospices, hospitals and the like on how they should review their practice and decisions.

The helpful point is: ‘focus on the constraints’, not on the overall circumstances that a patient is in. And get independent external reviews done of long-standing arrangements; it is easy to get seduced by continuing with arrangements that seem to be working well.

Deprivation of liberty safeguards: “A gilded cage is still a cage” | Kennedys.

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A gilded cage is still a cage – Supreme Court deprivation of liberties decision

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A Supreme Court decision on some of the most discussed of Deprivation of Liberties cases is now reported. A legal commentary indicates that these represent major changes in the DOLS law; the legal commentary suggests:

There are likely to be thousands of people who were not considered to be deprived of their liberty yesterday who will be today in light of this judgment.

It recommends that all local authorities and NHS organisations should review their caseloads; they will probably have to issue DOLS documentation in numerous cases where it was not thought necessary.

The judgement by the respected Lady Hale reviews the history of DOLS law in the UK and European Court of Human Rights decisions, some of which took place after previous lower courts in the UK had decided the cases in question here. It’s a very good primer on the existing law, and of course, as always with Lady Hale, very clearly written and calling on the original sources. No unnecessary legal jargon here.

Here are some useful quotations:

(at 34) People who lack the capacity to make (or implement) their own decisions about where to live may justifiably be deprived of their liberty in their own best interests. They may well be a good deal happier and better looked after if they are. But that does not mean that they have not been deprived of their liberty. We should not confuse the question of the quality of the arrangements which have been made with the question of whether these arrangements constitute a deprivation of liberty.

(at 35) …it is quite clear that a person may be deprived of his liberty without knowing it. An unconscious or sleeping person may not know that he has been locked in a cell, but he has still been deprived of his liberty. A mentally disordered person who has been kept in a cupboard under the stairs (a not uncommon occurrence in days gone by) may not appreciate that there is any alternative way to live, but he has still been deprived of his liberty. We do not have any difficulty in recognising these situations as a deprivation of liberty. We should not let the comparative benevolence of the living arrangements with which we are concerned blind us to their essential character if indeed that constitutes a deprivation of liberty.

(at 36) The whole point about human rights is their universal character. The rights set out in the European Convention are to be guaranteed to “everyone” (article 1). They are premised on the inherent dignity of all human beings whatever their frailty or flaws. The same philosophy underpins the United Nations Convention on the Rights of Persons with Disabilities (CRPD)…

(at 37) …what is the essential character of a deprivation of liberty? It is common ground that three components can be derived from Storck, paras 74 and 89, confirmed in Stanev, paras 117 and 120, as follows: (a) the objective component of confinement in a particular restricted place for a not negligible length of time; (b) the subjective component of lack of valid consent; and (c) the attribution of responsibility to the state…

45. In my view, it is axiomatic that people with disabilities, both mental and physical, have the same human rights as the rest of the human race. It may be that those rights have sometimes to be limited or restricted because of their disabilities, but the starting point should be the same as that for everyone else. This flows inexorably from the universal character of human rights, founded on the inherent dignity of all human beings, and is confirmed in the United Nations Convention on the Rights of Persons with Disabilities. Far from disability entitling the state to deny such people human rights: rather it places upon the state (and upon others) the duty to make reasonable accommodation to cater for the special needs of those with disabilities.

46. Those rights include the right to physical liberty, which is guaranteed by article 5 of the European Convention. This is not a right to do or to go where one pleases. It is a more focussed right, not to be deprived of that physical liberty. But, as it seems to me, what it means to be deprived of liberty must be the same for everyone, whether or not they have physical or mental disabilities. If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person. The fact that my living arrangements are comfortable, and indeed make my life as enjoyable as it could possibly be, should make no difference. A gilded cage is still a cage.

And even a good quality, but over-controlling, social care provision aimed at providing for a disabled person’s well-being still deprives them of their liberty, so you have to apply the safeguards.

For social workers and providers of social care, this makes it clear that even if what you are doing is for someone’s protection, and even if disability may lead to concern for someone’s safety and well-being, close supervision and restriction in the freedom to decide where you can go is still a deprivation of liberty, and requires the use of the safeguards.

Link to legal commentary: Supreme Court hands down decision on the joint appeals of Cheshire West and P&Q (MIG & MEG) – the Court ruled that all three were deprived of their liberty – Lexology.

Link to the Supreme Court Judgment Look for 19th March 2014 and click on ‘judgment’ in the right hand column in the cases of P and P and Q to get a pdf; the pdf is the same in both cases, since the judgment covers both cases. P and Q is what has been known as MIG and MEG in earlier proceedings.

Written by Malcolm Payne

21 March 2014 at 12:40 pm

Deprivation of Liberty legal and reports commentary

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Written by Malcolm Payne

20 March 2014 at 1:18 pm

People have not lost their mental capacity just because they are indecisive

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This is what the judge said:

‘…common strategies for dealing with unpalatable dilemmas – for example indecision, avoidance or vacillation – are  not to be confused  with  incapacity. We should not ask more of people whose capacity is questioned than of  those whose capacity is undoubted.

An interesting summary and legal comment on a Court of Protection case; a woman with long-standing schizophrenia, who was unable to make a decision which doctors thought was in her best interests.

Link to the report of the Court of Protection decision.

Link to the Lexology commentary from a specialist firm of lawyers.

Written by Malcolm Payne

17 March 2014 at 11:10 am

Information governance report covers social care, deceased people

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20140227 Infogov reviewStimulated by all the discussion about whether we should agree to GPs sending our medical records to a central source to be sold to insurance companies and the like, I’ve been looking at last year’s Information Governance Review.

Link to Information Governance Review Report

This is a follow-up to the Caldicott Review of 1997, which you can get on the Internet from the Government Archives; they are now archiving important web documents…

Link to the Caldicott Review (1997)

This is one of those amazing government documents that led to something happening, and for some years, I was a Caldicott Guardian, charged with representing patients team in the management of the hospice I worked for as part of ensuring the confidentiality of their records.

Link to the Caldicott Guardians website.

The Review Report from last year went back to the whole process, and particularly in the light of the massive expansion in communication arising from the ubiquity of the internet. Also amazingly, Dame Fiona Caldicott was still around to chair it, and still had enough credibility to do so.

One new feature is that health and social care are covered, since although the term ‘social care’ was just coming into use back then. It is now more commonplace. But not really in anything to do with the Department of (very much only) Health. In the new report it is all ‘elfnsoshall’ with the basic assumption that you don’t need to think very much about what social work is all about – just talk about the NHS and everything is the same. Very few people involved directly with social care were on Dame Fiona’s committee.

There is a section on children and family records, and this covers some of the complexities of social care records in this field, but it still references the Royal College of General Practitioners and the BMA rather than agencies with social care expertise. It notes issues about children’s social care records: many children’s social care departments have family records, alongside individual children’s records, and this has always been complicated, although is better in some ways since computers permitted multiple postings to different records, if an entry covered several children or family members in one go.

However, the report also notes that the Health and Social Care Information Centre (of current GP records fame that has covered itself with pooh over its schemes for GP information) does not have the statutory right to collect children and families social care data. I’m comforted by this, in view of the government’s wish to sell as much health data as possible to private sector organisations for as much money as possible, which has only been stymied for a brief period of grace before it goes ahead again, due to widespread anxiety about confidentiality. We can do without this organisation getting its commercialised mitts on social care data as well.

There is also a brief section on deceased people, since NHS records are clearly available to appropriate people after death, while this is not possible in social care. The proposal is to think about people being able to give custody of the health and social care data in their Will: this would resolve some of the problems health care agencies have in giving access. Although perhaps not. When I worked in a hospice, fighting over the records was often a follow-on to fighting among family members about the estate, sometimes as a proxy for their role in the family

5.7 The deceased

There is a lack of consistency in the approach to the data of deceased people within the health and social care system. The common law duty of confidence is generally regarded as extending to the deceased but the Data Protection Act only relates to the living. Legal representatives or those with a claim on the estate of a deceased person are able to access the health records of the deceased person through the Access to Health Records Act 1990, but there is no equivalent legal route for access to social care records. Some ‘work-arounds’are used but these are increasingly untenable (p 58).

As people gain more control of their information, it should be possible for a person to give custodianship of their personal confidential data after their death to someone, or to a research data bank, so that future generations can use it to learn and improve the health and wellbeing of society.

The review panel concluded that the Law Commission, in their review of the legal aspects of data sharing should consider looking at how the law surrounding deceased persons might be better harmonised. In particular, the Panel would like the Law Commission to consider ensuring there are no legal impediments to giving custodianship of their health and social care data within their last will and testament (p59).

But it does contain a useful pile of information about information – well worth taking a look at and following up.

Written by Malcolm Payne

10 March 2014 at 11:28 am